Our Little Hero

After a rough night on Thursday, we had a better day on Friday, watching Game 7 of the World Series in Amelia's room as a family.  And now, only 5 days after surgery, we are headed home...soon that is... (still waiting for a few things to happen).  We have had a pretty good visit again.  We are now on a stable road for the time being.  Amelia has a dedicated circulation pattern delivering blood to her lungs to provide oxygen to her body.  We can treat her like a normal baby (for the most part) and she can grow and act like a normal baby.  We have to be careful about infections like the cold and flu, but she has a very good chance of living a long and normal life.


Our little lady bug has become our hero!!!  She has been through two open heart surgeries as the doctors work to replum her veins and arteries and fought off an infection after the first surgery.  She has had more pokes and more tubes than most people get in a lifetime.  And yet, she still smiles and talks to the nurses and doctors so much that they love to stop by and talk for a second before heading home.

So, now we look toward our first Thanksgiving, followed by Christmas, followed by, you guessed it, a trip up Angels Landing during her first annual, 4th of July trip to Zion National Park.  We still have her last surgery to complete the replum, but that is about 3 years off.  For now, we finish her post op over the next month and then enjoy watching our Amelia learn to walk and talk and become a little girl.


Thank you all for your prayers and support over then last 6 months as we learned about our heart condition and as we have spent time in the hospital getting Amelia on a path to a long and fruitful life.  To God be all the glory for the great things He has done for us.

Amelia, Kimmy and Brian

Getting Closer to Going Home

We are continuing to get ready to go home.  It will probably not happen today.  Last night, Amelia was desating (her oxygen saturation was falling into the 60s - the lower limit is 75) for over an hour.  We think it was just the results of pain, but we are remaining on the cautious side, so another day it is.  Other than that, she is doing great.  She is eating and smiling and talking to us all the time.  So, we may be going home tomorrow.

Amelia, Kim and Brian

The Smile is Back and Amelia is Talking to Us Again

Today, for the first time since 7:30 Monday morning, we got to see that beautiful gummy smile that we were used to our Amelia showing us.  She was finally weaned off the oxygen this morning and we removed the nasal cannula.  Shortly afterwords, she erupted into a huge gummy grin!!!  It was the first grin since we duped her on the way to the OR Monday morning.  She continues to get back to herself.  She is talking to us again and the pain seems to be getting better.  The pain meds she is on continue to be weaker strength meds (aka no more Morphine).  We are starting to look forward to going home.  That should happen before the month is over.  We are kind of sad about that because we started to plan Halloween activities with other families who were stuck in the ICU for the special day.  Every day she is getting better!!!

We continue to be grateful for all your love and prayers.  Thank you so much!!!

Amelia, Kim and Brian

Continuing to Recover

I was trying to think of a title for this post, and for a while, the only thing that came to mind was "Continuing to Improve".  That is not really the case since she did not take a dive after surgery, but, Amelia continues to get better.  Yesterday evening, the chest tube was removed and we are back to only the PICC line (which we came to the hospital with from the infection 6 weeks ago).  Kim had a chance to hold Amelia for a few hours yesterday, which was a little hard because she is still in some pain from the surgery.  She had a good night, eating well and was not too fussy.

This morning was a little harder.  The pharmacy was a little slow delivering pain meds, so she was a little unhappy until we could give her the medicine.  Once administered, she calmed down and has been doing well this afternoon.  She is still on oxygen and we are hoping she will be off before bed time this evening.  We are not sure when we might be headed home yet.  We still have a few things to work on.

Amelia, Kim and Brian

Recovering Well

Amelia had a good night.  She was up a few times with a little pain, but our nurse did a GREAT job comforting her.  The doctors have allowed to her eat this morning and she downed two pedialyte bottles.  She also had some mommy milk for lunch.  She is moving around and looking at us too.  She had two more tubes removed this morning, so we are progressing nicely.  She is still sleeping a lot, but we are excited about how she is moving along.  We are hoping to have a chance to hold her again before we go to bed this evening.  Keep praying that she continues to improve and continues to respond well.  Also, due to her new circulation pattern, we have been warned that Amelia will have headaches for a month or two, so pray for her and us that this time is limited.

Amelia, Kim and Brian

Extubated Take 2

Amelia was just extubated again.  She is very horse, but at least we can hear her cries again!!!  What a crazy experience it is to be happy to hear your child cry again!  Who knew that sound would be such music to our ears.

This surgery has already been such a different experience.  Amelia came back from surgery looking much different than the first surgery.  Her chest is closed, there are less tubes and she is already coming off the sedatives given for surgery.

We have had several bouts of GREAT news too.  During her catheterization on Friday, a heart electrical specialist confirmed there were no abnormal electrical paths to worry about, which means one less medicine when we go home and one less worry.  During surgery, the doctors did not have to put Amelia on the bipass, so the surgery went faster than expected.  She is already extubated and no NG (feeding tube), so we are excited.  Hopefully we will continue with the good news all week!

Amelia, Kim and Brian

Back in Our Room

Amelia is back from surgery.  She initially came back to her room extubated, but was still too sedated to breath on her own, so the doctors decided to intubate her again.  She again has a number of pumps (for medicine) and tube running into her body providing the medicines and draining fluids.  Please keep praying.  She looks much better that she did after her first surgery, but we are still sad.

Amelia, Kim and Brian

Out of Surgery

We are waiting for Amelia to make it back to our room.  Our doctors have told us Amelia did very well.  She has been extubated which is amazing.  Please keep praying for a speedy recovery.

Amelia, Kim and Brian

Getting Ready for Surgery

Last night at about 8:30, our nurse came into our room and told us she just received a phone call from our surgeon and our second heart surgery for Amelia is now scheduled for this morning.  Kim and I found ourselves suddenly trying to prepare ourselves for surgery in less than 12 hours.  There are no complications or major worries with Amelia since she is doing well.  The doctors are starting to worry about her Sano Shunt, just because as she grows, she starts to out grow the shunt.

We just signed the consent forms and the doctor gave us the "chances are...for complications...".  So, we are now waiting for the surgical team to come and finish preparations and to take her down for surgery.  Please pray that Amelia responds well and the doctors hands will be strong, confident and sure as they work on Amelia.  Pray for her entire surgical team as well for wisdom in making decisions while they are operating.

Amelia, Kim and Brian

Heart Catheter Procedure - Preparing for the Glenn - Operation #2

Well...It has been a long time since we have posted.  That is because we have been home with Amelia.  Since we checked out following the first procedure, Amelia has grown used to her home and Mom and Dad have become sleep deprived!!!  This was exaggerated over Labor Day weekend because we had to check her back into the hospital for an infection she developed in the incision on her chest.  We were in for 8 days and sent home on PICC line antibiotics 3 times a day for 6 weeks.  Can you say no sleep???!!!  We enjoyed watching her learn to smile and recognize Mommy and Daddy and be a somewhat normal baby.

This Wednesday, we had another clinical follow up with our cardiology team.  Amelia was starting to be fussy for Kim during the day and she had started to change her eating patterns.  The sonographer also saw some slight changes in her heart function.  With single ventricle babies, it is the small subtle signs that cause the doctors and nurses to be concerned.  With the signs Amelia was showing, we checked in for observation.  We had a Catheter procedure scheduled for Oct 28th which was pushed up one week to this morning.

The Cath went well.  Amelia came back awake and fussy - she had not eaten in 10 hours.  The doctors did not find anything problematic with her Sano shunt.  She has grown well and the pressures and functions in her heart and lungs were very strong.  In addition, after her first surgery, there were some heart arrhythmias, and with that, some worries about the electrical paths in her heart.  One of the specialist said he did not see any abnormal electrical paths in her heart during the cath procedure which is very good news.  Our surgeon likes to complete the second operation, the Glenn Procedure, at 3-4 months old.  Amelia will be three months on Sunday, and with her fussiness and since her heart and lungs have developed sufficiently for the Glenn, we are going to stay and get the operation scheduled for sometime next week.


This is both exciting and scary news for Kim and I.  We know that making it through the next procedure completes the last of the biggest hurdles for HLHS babies.  Chances are, when we make it through this surgery, we will be, for the most part, out of the woods as the chances that she will make it on into adulthood rise significantly.  But, we have to go through the difficulties of heading off to surgery again and seeing our little girl come back sedated, limp on her little bed.

Please pray for us as we prepare for next week.  We new the time was short until her next procedure, but we not ready for it to some this fast.  We know God is in control and He has had is hand on our little peanut through this entire time, yet it still takes a toll on us as we go through the surgeries and recovery.

Bless God!!!


Amelia, Kim and Brian